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Advances in ALS Research

6:30 PM — 8:30 PM

Moderated by Hemali Phatnani, PhD

See New York Genome Center’s lecture series, events and archives VIEW FULL CALENDAR


Thursday, May 16, 2019
6:30 PM – 7:30 PM: Presentations, Discussion and Audience Q&A
7:30 PM – 8:15 PM: Reception


New York Genome Center
101 Avenue of the Americas, 1st Floor Auditorium


Tickets are free; advance registration is required.




Hemali Phatnani, PhD
Director, Center for Genomics of Neurodegenerative Disease (CGND)
New York Genome Center


Hemali Phatnani, PhD, is the Director of the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC). Dr. Phatnani has a joint appointment as Adjunct Assistant Professor of Neurogenetics in the Department of Neurology and the Institute for Genomic Medicine at Columbia University.Her research focuses on gene regulatory mechanisms that underlie the complex interactions between motor neurons and non-neuronal cells in the spinal cord of ALS mouse models, including astrocytes, microglia and oligodendrocytes. The goal of her research is to apply state-of-the-art genomics and bioinformatics to understand the role of cell-cell interactions in ALS pathophysiology.Dr. Phatnani carried out her postdoctoral studies in Dr. Tom Maniatis’ Lab at Harvard and Columbia Universities, where she studied ALS disease mechanisms using stem cell-derived motor neurons and genomic profiling methods. She established a novel cell culture system to study cell intrinsic and cell extrinsic effects of astrocytes on motor neuron gene expression and discovered a complex interplay between the two cell types during ALS disease progression.

The CGND at the NYGC has formed an ALS Consortium involving alliances with clinicians, scientists, geneticists, computational biologists and industry partners. The primary goal is to discover mutations underlying ALS and to understand how they cause disease. The Consortium establishes a framework to apply clinical and functional genomics together with bioinformatics to the study of ALS disease mechanisms.

Dr. Phatnani received her PhD in Biochemistry and Molecular Biology at Duke University, where she characterized the interactions between RNA polymerase and proteins involved in the mechanistic coupling of RNA transcription and processing. She earned a BSc degree in Life Sciences from Bombay University.




Neil Thakur, PhD
Executive Vice President,
Mission Strategy
The ALS Association


Neil Thakur became Executive Vice President of Mission Strategy in May 2018. He leads the advocacy, care services, and research programs for the Association.

Prior to joining the Association, Dr. Thakur served in the National Institutes of Health (NIH) Office of the Director, where he supported NIH governance and helped make NIH research more open and less burdensome. He managed the world’s largest policy to make biomedical research papers publicly accessible and co-chaired the White House taskforce that lead to the requirement that all federal science agencies adopt similar policies. He also spent a year on detail to the US Senate Special Committee on Aging, raising awareness about quality issues in long-term health care, particularly around Alzheimer’s care and pharmaceuticals.

Prior to his time at NIH, Dr. Thakur worked with health systems in many capacities. He was Assistant Director of Health Services Research and Development at the Department of Veterans Affairs (VA), leading an evaluation service for the VA health system and represented the VA research service in setting clinical performance measures. In his post-doctoral-fellowship, he studied the interactions between jails, Medicaid and behavioral health care, and how changes in health financing impacted people’s utilization of these systems. During graduate school, he worked throughout the Connecticut behavioral health system, helping to implement managed care and health information systems, and raise tens of millions of dollars in competitive grants.

Dr. Thakur won many awards for his government service, including several NIH Director’s Awards, and the Secretary for Health and Human Services’ award for Meritorious Service, the second highest award that the Secretary can bestow. He holds a PhD in Health Policy from Yale University School of Public Health and completed a NIMH postdoctoral fellowship in mental health services research at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill.



Matthew B. Harms, MD
Assistant Professor of Neurology
Columbia University Irving Medical Center

Matthew Harms, MD is an Assistant Professor of Neurology. Dr. Harms received his AB in Biology summa cum laude from Harvard University in 1997, and his medical doctorate from the University of California San Francisco in 2003. He remained at San Francisco for neurology residency and served as Chief Resident in his final year. Dr. Harms completed neuromuscular medicine and clinical neurophysiology fellowships under the mentorship of Dr. Alan Pestronk at Washington University in St. Louis. His clinical training in neuromuscular diseases led him into the laboratory of Dr. Robert Baloh, where his post-doctoral research identified the genes responsible for two orphan human diseases- dominant spinal muscular atrophy with lower extremity predominance and limb-girdle muscular dystrophy type 1D.Dr. Harms joined the neuromuscular medicine faculty at Washington University in 2009 with board certifications in neurology, clinical neurophysiology, and neuromuscular medicine. In 2011, Dr. Harms assumed leadership of the Washington University Neuromuscular Genetics Project and established his research laboratory to continue harnessing emerging genetic technologies to understand the causes of inherited neuromuscular diseases. The lab focuses on diseases of the motor neuron, including amyotrophic lateral sclerosis, spinal muscular atrophy, and the hereditary motor neuropathies, and where his efforts have helped identify more than 5 novel disease genes. At Columbia, he continues these efforts, directing an international multi-site effort using whole genome and transcriptome sequencing to bring precision medicine to amyotrophic lateral sclerosis. His laboratory efforts will occur in both the Motor Neuron Center and the Institute for Genomic Medicine.



Lyle W. Ostrow, MD, PhD
Assistant Professor of Neurology and Pathology
Johns Hopkins University School of Medicine


Dr. Ostrow is an Assistant Professor of Neurology and Pathology at Johns Hopkins.  He received his M.D. and a Ph.D. in Biophysics from the State University of New York at Buffalo, followed by Medicine Internship, Neurology Residency and Neuromuscular Medicine Fellowship at Johns Hopkins.

Dr. Ostrow’s clinical practice and basic science research are focused on ALS and related neurodegenerative disorders.  He also performs diagnostic open muscle and nerve biopsies, reads clinical nerve and muscle pathology, attends on the Neurology Inpatient and Consult Services, and supervises the Neurology Residents’ and Neuromuscular Fellows’ Clinics.

He established and directs the Target ALS Multicenter Human Postmortem Tissue Core, a multicentered effort which integrates clinical and pathological data, tissue samples, biofluids, genomic data, and slide imaging – all made broadly available to the ALS research community to foster and accelerate collaborative ALS research among academia and industry researchers.  He is involved in numerous collaborative studies using these tools and has helped design and continue to direct several large ongoing and evolving multicenter research efforts in neurodegenerative disease.  Dr. Ostrow also established and runs an annual one-day Workshop on Postmortem Tissue Banking.

He serves on the Executive Programmatic Panel for the Department of Defense (CDMRP) ALS Research Program, and on numerous other committees and review panels for the ALS Association, the Northeast ALS Consortium, the New York Genome Center ALS Consortium, the Target ALS Foundation, ALSUntangled, and others.  He also served on the workgroup tasked with drafting the Biomarker chapter for the FDA Guidance Document on ALS Drug Development, and is on the Advisory Committee for an ongoing NIH U01 Multicenter ALS Biomarker Validation Study.

Dr. Ostrow recently completed a pilot clinical trial of mGluR5 PET imaging in ALS patients (data analysis is ongoing), and is co-directing a collaborative pre-competitive ALS biomarker development effort involving ten pharma/biotech industry partners and several research foundations.  He chaired an expert panel on “ALS Biorepository SOPs and Harmonization,” and has given numerous talks on postmortem tissue collection, biomarker development, and facilitating open and collaborative access to resources and data for neurodegenerative disease research.


The Evening Talks Series is sponsored by The New York Community Trust – Pyewacket Fund.

    The New York Genome Center’s Evening Talks events feature distinguished experts from around the world sharing genomic insights and research. They are intended to showcase and explain high science to the non-scientific community. Speakers present the latest research findings and explain its implication for helping improve clinical care for a wide array of serious diseases. The lecture is followed by a lively question-and-answer session and a post-event reception of hors d’oeuvres and cocktails. These popular free public events are held in the Center’s state-of-the-art ground-floor auditorium starting at 6:30 pm. The Evening Talks Series is sponsored by The New York Community Trust – Pyewacket Fund.

  • Computational Cancer Genomics Working Group Evening Lectures
    Computational Cancer Genomics Working Group is led by Simon Tavaré, PhD, NYGC and Columbia University, and Sohrab Shah, PhD, Memorial Sloan Kettering Cancer Center. This group will build collaborations that apply novel statistical approaches and population-level analyses to major cohorts in cancer genomics.